Hi folks! Some of you may remember that I've been taking 180 mg. of methadone per day and 30 mg. of oxycodone for break-through pain and 100 mg. of Zonegran for nerve pain for the past 10 months or so. Several weeks ago I decided to stop the oxycodone cold turkey because I didn't think I needed it and wanted to get a better idea of my "real" pain level when not taking it. I was only off of the oxycodone for about 2 weeks before realizing that I still needed it and so I was rx'd another script for it. Well, last Friday I saw my pain management doctor in Baltimore. We talked about my desire to start decreasing the dose of methadone I'm on and my feeling that the Zonegran wasn't doing a thing for my nerve pain. After lots of discussion (he never seems to want to push me out the door and takes plenty of time with me) he has changed my meds to the following: Methadone 160 mg. per day, titrating down by 10 mg. every 5 days; Lidocaine patches for surface pain (seem to work great for me) and Topomax, 25mg. twice daily to start, titrating up to a maximum of 200 mg. per day. He continued the oxycodone for breakthrough pain at the same 30mg. three times a day if needed. The other big change - I asked him if he would consent to writing my prescriptions from this point on because of the more complicated nature of the titration schedules. He had always recommended my medications to my primary care doctor who would then write the scripts. He agreed to take over the scripts and I'll see my primary guy tomorrow for a routine check up and give him the news. Something tells me he will secretly jump for joy!! It can't be easy trying to manage someone like me who is on so much narcotic medication. Anyway...I'll have to drive to Baltimore once a month to get my scripts (they won't mail them) but it's only 1 hour away. He told me that I didn't have to sign a contract and that I didn't need to see him when I needed my refill, just phone a couple days ahead and tell the nurse when I'm coming. I need to ask the nurse how often he wants to see me for a face-to-face. He also gave me a referral to their pain management psychologist who I can see up to 4 times a month for FREE! It's all part of the pain management program and included in the doctor's visit fee. Well...I'm not really sure why I'm telling all of you this, but you've become like my second family and wanted to update you guys about the changes. Thanks so much to the folks who helped me through the oxycodone "cold turkey" week. All the best - KathyMac

It sounds like a great plan to me and I think it's fantastic too that you can see the psychologist. They are so important in helping us get a grasp on the pain on an emotional level and often can teach you things like biofeedback and meditation which are helping in coping with the pain and the stress.

I find it odd that your PC doc wrote the meds and not the PM but there are a few out there who do that. It will just make it easier on you in the long run in having to deal with less doctors at one time!

Barbie and Kelsey1 - My pain management doctor works out of the University of Maryland medical system - he is located at Kiernan Hospital which is about 70 miles away from where I live. Because he sees patients from all over the country he couldn't possibly be the doc who writes all of the scripts. What he prefers to do is to have the patient's primary care physician become part of the pain management team - he personally calls the primary doc and they discuss his findings and what his medical recommendations are. My pain manag doc feels that a patient's primary doc knows the patient's medical history better and sees the patient on a much more frequent basis than he does; and as long as the primary is willing to write the scripts that he recommends, he leaves it to the primary. I'm not sure what he would do if a person didn't have a primary that was willing to "join the pain team". I do know that he does see folks from Baltimore and closer-in at the clinic and he does write scripts for those patients. Anyway - for me it worked out very well. My primary was open to writing the scripts, but he certainly isn't well versed on pain management. As I said in my previous post - now that things are getting more complicated with the titrations, etc., he is going to take over the script writing. Hope I haven't repeated myself too much. Take care - KathyMac

Frankly, I feel that this is a way for an Opiod-phobic Doc to pass the buck. My PM Doc writes all of my narcotic scripts. Most GP Docs will NOT do it. But by finding one that does, a PM Doc can wash his hands of writing Schedule II meds.

Hi Kathymac--I did reply to you in our long, but interesting topamax thread I get scrips from both my reg dr and my pm. I get horribly worried about mixing some of the things they give me, and I end up playing phone tag. Usually checking with my pm to make sure I can take what the other dr gave me. I always check with the pharmacist too. I don't know anything about pain pills and they scare me to death. My other dr is very pill happy and I have told her numerous times I really don't like pain pills, but she pushes them on me like you wouldn't believe. When I first went to my new pm and I listed all my meds he was like--are you taking all of this?? Can you believe he did not make me sign a contract with all of that? I am required by work comp to see my regualr dr every 4 weeks, and of course I need my pm. My problem is that I tried all the meds and I still hurt and they made me feel like crap. I did ask my pm if it was normal for both of them to prescribe me meds and he it was ok. I asked if I could please have just one of them do it and he said he would really rather keep it this way. They both prescribe me pain pills. So far only the pm has been the only one to give me the topamax. Good luck with the topamax-it will make you write long replies that make no sense!!

Thank you for the update. You are inspiring and courageous (trying to reduce your use of opiates) and I wish you luck and will be looking for your updates as to progress.

Like Angela I am also on topamax and think it is a wonderful drug if you either don't have side effects or if you can tolerate them (everyone is different). Also I kept reading that the side effects get better over time and I was about ready to give up and now finally I only struggle a little bit with the side effects.

Poor Stacey--sorry it took so long to reply to you, I have three bulging discs in my lower back with sciatic nerve problems and two in my neck with nerve damage that was giving me headaches and migraines. I also get rotten pain in my shoulders and arms. My back is full of athritis and ddd as is my hips and knees(athritis). I honestly don't take any of the meds except the motrin and the topamax. I was really hoping the topa would help some of my other pain. It is working on my headaches and that alone is a God-send. For some reason also I end up unable to walk on my right foot and I have never injured it! KM does seem to be getting some of that other pain relief and that is great!! I'm glad to hear that. My dr just threw these meds at me and didn't tell me how to take them--in fact I just started my own thread asking for some advice on that because the pain is getting to be just a little too much. I'm not even sure which med is the methadone!!

I wanted to update folks on my progress - today I am down to 50 mg. of methadone 3 times a day as opposed to the original 60 mg. of methadone 3 times a day. So far I haven't had any "withdrawal" symptoms, but I've noticed that my pain level is higher when I wake up in the morning. Yesterday when I woke up I was in so much pain that I couldn't really move any of my limbs! It felt like my rheumatoid arthritis had flared up in a big way. I couldn't bend my fingers or bend my arms without excrutiating pain. My arthritis has been under control for years with prednisone and I haven't had a flare in a long, long time! So I was very suprised to wake up in so much pain. After taking my methadone and topomax and waiting about an hour, I started feeling some relief. Also, I'm now up to 100 mg. of Topomax per day split 50mg in the am and 50mg in the p.m. I'm noticing that I'm having a constant aching headache most of the day and I'm attributing it to the topomax. Has anyone who uses Topomax experienced headaches while on this med? I know that migraine sufferers use it to stop the migraines, but can it also give a person a headache? Also, does it seem that my doc is upping my topomax too quickly? I've been going up each week by half - and by next week I'll be at 200 mg. - that's the maximum dose that he wants me to stay at. All in all it will have taken me just 4 weeks to get to 200 mg. of the topomax. I haven't really experienced any other side effects that I'm aware of except the floating dots in front of my eyes last week which have seemed to go away this week. I'm still using the oxycodone for breakthrough pain, but trying to get through the day without it. I'm thinking that most of the pain that I'm feeling is "rebound" pain from going down on my methadone. I wonder how long it takes for your body to start making its own natural endorphins again? Anybody know? Well...that's where I am at this junction. Any advice or opinions are welcome!! Especially when it comes to the topomax and the headaches. Thanks folks. KathyMac

Good question Dave!! My doctor and I are trying to reduce my methadone to the lowest possible dose and still get adequate pain control. I was anticipating an "adjustment" period as we titrated down. My pain management doc explained that it would take some time for my body to adjust to the lower dosages before we could really tell how much methadone I truly needed. I understand from talking with him that our bodies stop making natural pain killing hormones (I think called endorphins) the longer we are on narcotic pain medications and that it takes time for the natural pain killing chemicals to start being produced again. Also, when I did take my methadone this morning, the pain did go away even at the lower dose. My goal in all of this is to see how low I can go with the Methadone and still have good pain relief. I know it won't be 100% - I'm only looking for manageable pain. If I can get the same amount of pain relief from 50mg of methadone a day as I can get from 180mg, why should I take 180mg, right? I've been on such high doses of meds for so long that I don't really know what my pain level is without the meds. Does that make sense? KathyMac

Hey Kathy - From what I have read and seen you are going up pretty fast on the topamax and even once you are at the target dosage your doc wants you at it takes a while for it to do it's job. The goal of topamax is to change your brain chemistry somewhat - to calm some of the gaba receptors in your brain, less activity which results in less passing of pain messages to the brain (this is a very simple explanation that I got that I could understand, it is actually more complicated than that).

For example (I will use migraines) - typically 100mg daily (50mg taken twice a day) is the recommended therapuetic dose for most people with migraines. The drug manufacturer recommends you tirate up to 100mg by starting at 25 mg for a week and then add 25mg each week until you are at 100mg and if you have trouble with side effects to even go slower than that. (I know as my doc contacted the drug company about me having trouble with side effects and they suggested I cut back and tirate up again more slowly.) Anyway once you get to the target level of say 100mg it then takes at least 1 month at that level to evaluate how well it is working. If the patient is still experiencing migraines (maybe not as many as before or as severe) then a further increase in dosage may be indicated as determined by doctor and patient. The same holds true for managing pain, seizures and the various other things topamax is used to treat. That said though, there are people who have tirated up to much higher dosages (or ot tirated at all) and had no side effects and had great success.

Now to the headaches you are having and thinking it is the topamax. I don't know. I don't think headaches are a common side effect of topamax because like you pointed out topamax is used to treat headaches and migraines and is very effective for just that. However, through my readings with topamax and this board any side effect is possible with this drug as it effects your brain, your temproal lobe to be exact. One thing I would question though before concluding it is the topamax that is causing your headaches is to consider whether it might instead be the reduction in the other meds or the combination of the reduction and the addition of the topamax. To me there is an inherent problem with making multiple changes to your medications at the same time as it is hard to know what then is causing a new unwanted symptom, especially when it is such a common one such as headaches. If you had stated you were experiencing tingling hands and feet then I would say that is the Topamax as that is a major topamax side effect, but headaches - well maybe it is the lower does of the other med (sorry I can't remember which opiate it is - that's me on topamax). The other thing that is bothering me about what you are going through is that you are decreasing the pain med that is working for you before you have the theraputic dosage of the alternative medication in your system (the topamax) and already you are having pretty bad pain - I don't mean to say I am questioning your decision or your doctors - it just seems a little weird is all, but then again maybe this is part of what you wanted to find out, what your true pain level was.

I would add this, given that you aren't reporting any other major topamax side effects and assuming the headaches aren't unbearable, try to hang in a little longer with the topamax to give it a chance to work. Obviously talk to your doctor too. It would seem an easy way to find out if the topamax is causing the headaches or not would would be to increase the other med back to the old level although I do understand that is goes against the goal of what you are trying to do. (Also, if the headaches are from the topamax there is also a fair to good chance they will go away, topamax side effects tend to lessen with time as your body adjusts - your brain learns how to do things new ways - it sounds a little silly but it is true or at least I found this to be the case for both mental and physical symptoms.)

Wendy - thanks so much for all your good suggestions! You make perfect sense to me and I agree with your statement about it being hard to figure out what is causing the problem - the increase in topomax or the decrease in methadone - since they are happening at the same time. I'm going to give my doc a call today and see what he has to say. I thought perhaps I was going up pretty fast with the topomax dosage. I can honestly say that I've felt no ill effects from the topomax unless these off again on again headaches have something to do with the topomax. But you are probably right when you say it's more likely they are related to the decrease in my meth. Your post really helped clarify things for me - all the best - KathyMac